sharing Rhett's heart with the world

Welcome Home, Rhett

December 12, 2015by Jordan Spangler

Things are finally starting to settle down and I’m really excited to finally get to post another blog entry, be forewarned that this one will be really long because we have THIRTY FOUR days to cover! Rhett has been home for 34 days and being home with him has changed everything for the better. I want to take a minute to thank everyone at Cooks. Thank you for being there for us every second of every day for 33 days. Going into this we knew it was going to be hard and we were absolutely right. To see your child go through what Rhett had to endure was the hardest thing either of us have ever done. The entire staff was so kind and supportive to our every need. They even managed to make some of it fun, but I think that goes along with how Amanda and I decided to live out our 33 days there. Situations are only as good as you make them and we chose to keep everything as light hearted as we could. That’s just the way Amanda and I are wired and in a place that can be so sad we chose to smile.

There were reminders every day as we walked the halls that it could always be worse. There are so many brave kids there that have their own path to walk that is very different from Rhett’s, but to see the smile on those kid’s faces was uplifting every day. Those kids just have a way of smiling through it all and it’s empowering. There was a little boy who I don’t know what was wrong with but he rode around on a little tricycle while, what I’m assuming were his mom and grandmother followed behind him with his little pole that held his medicines. Everybody knew him, so I’m assuming he had been there for quite a while. I watched that kid ride around for days. One day when Talon was up there to see Rhett we ran into this kid on the playground. He had a sword and a little gun and he was fighting bad guys. Talon and I played with him for about 15 minutes as they fought bad guys together and he let Talon use his gun. I’m assuming he and Talon are about the same age. But neither he nor Talon were bothered by what was wrong with him. They were just two little kids fighting bad guys. I hope I can continue to raise my boys to see past everything on the outside and just see the person in front of them for who they really are on the inside. It was a very special moment for me as a dad to watch them play. I hope his mom felt the same way.

The support we received by all of our nurses and doctors was second to none and they made it as easy as it could have possibly been. Many of them became friends as we shared those 33 days together and a few of them I know we’ll know for a long long time.

Dr. Tam was who did Rhett’s surgery. Talk about an amazing man… to do what he does is miraculous. To think about how small Rhett’s little heart is and to see this man’s hands I can’t even imagine what that feels like to open up a child’s chest and stitch vessels together. He was so genuine when he came by to check on us and it was without question that he loves each of these kids. He’s literally saved so many children. What a life.

Dr. Roten, who is Rhett’s cardiologist, has been our main contact since we first went to Cooks. At 22 weeks she diagnosed Rhett with Tricuspid Valve Atresia with Malposed Great Vessels and wouldn’t you know it, once he was out and they took a closer look… she nailed it. When she passed us in the halls or stopped by our room she always had a smile on her face. She talks a million miles a minute but has a way of communicating in a way that calmed us at every turn. We have chosen her as his official cardiologist, so we look forward to visiting her for years to come and as Rhett keeps busting through milestones.

Dr. Duncan is one of the CICU doctors… This guy is so cool. As time went on we had a running joke about me being a doctor on the side and he’d always check with me before making any decisions to make sure I “concur”. He really helped lighten the mood and you could tell his team responded well to it. Class act. After I went back to work he ran into Amanda and said “Where’s the doctor?” Amanda told him that I had to go back to work and he said “oh…the patients needed him?” Such an awesome dude!

Dr. Davis is another CICU doctor She made Amanda feel better every time she came in to talk to us. You could see how hard she thought about how she wanted to phrase things to make us feel the most comfortable. It definitely worked. She really pushed for mom and dad time as the best medicine and we really connected with that. She has such a kind and gentle demeanor. It’s so cool to see people with so much knowledge. I wish we had been her only patient because I could’ve listened to her talk for hours.

Seeing what all of those people do really makes you question your purpose in life because you get to watch them change lives on a daily basis. I know I’ll never be a doctor, but I hope by writing this blog it’ll help even just one person that may have to experience what we went through or even something similar. So again, thank you thank you thank you Cook Children’s for making us feel special.

We left the hospital around 11:00am on November 9th. Rhett had been in the hospital for 33 days so it was weird to take him outside. I mean the kid had never even seen the sun. We loaded him up in the car. We sat in the parking lot for a minute and shed a few tears, but we were elated to finally be going HOME. I’m sure you other parents can relate to taking your kid home from the first time. It’s pretty scary, not because I don’t trust my driving but you have to worry about all the other crazies on the road. Sure enough, as soon as we get out of the parking lot somebody ran a red light. I was being overly cautious so there wasn’t any chance that they’d hit us, but still! Then when we got on the highway it sure felt like everyone was going about 100 miles per hour! Slowly but surely we made our way home and were met with welcome home balloons! Our neighbors across the street were outside so we took Rhett over to say hi. She cried.

It’s been an amazing journey so far and it’s so weird to have so many people following along. It’s bigger than just our little family. It truly does take a village. All of the prayers and well wishes have been so comforting and every time someone new gets to see him for the first time who’s been following along it fills us with so much joy.

I think it was the day after we got home that Home Health came by to check on us. They are Cooks traveling warriors and they came to make sure we were getting settled in and to make sure we had all of the supplies we needed (believe me there are a lot). She came in and sat down and as we were talking she seemed pretty surprised as to how much we knew about what was going on with Rhett. She was asking if we knew about the feeding tube and how to change it. We told her step by step since we had been given instruction and practice at the hospital. We had all of the supplies we needed and so she was like… welp I guess we’re all good here. Boom! Momma and Daddy are on top of it!

Rhett has a pretty serious medicine schedule:

He started out on:

Enalapril – For his blood

Lasix – to help him pee

Aspririn – for blood

Bethanechol – for puking

Prevacid – for acid reflux

Since then we have stopped the Lasix and added in Miralax and gas medicine because wouldn’t you know it…he has trouble pooping.

On top of all that is making bottles! Talk about craziness… We had to mix breast milk with an acid reflux formula to help with Rhett’s little puke problem. Then you had to add that to just breast milk. You’d make like 6 bottles for the day because in the beginning Rhett was getting 60 milliliters every 3 hours. (For reference a normal shot glass is about 1 oz. which is equal to about 30 milliliters). Since being home we have moved up to 85ml every 4 hours which has made a huge difference in the amount of time Amanda has to do other things! Luckily with this new setup we can now make one bottle at a time. Feeding goes like this: Make the bottle, warm the bottle, try to feed Rhett for 20-30 minutes, measure what’s left when he’s done, add that to the feeding bag, calculate the rate/dose for the feeding tube, wait for it to finish, the clean out the bag. Basically by the time this is done it’s just about time to start all over again. Amanda was having to find time to pump in between and it was really wearing her down. We thought maybe we could try just doing the formula and since we switched to that, Rhett has been eating so much better. We are going to try to donate all of the milk Amanda has left to the hospital. He started out only drinking between 10-20ml per feeding and now he’s getting over 25ml pretty consistently. When we came home he weighed 7lbs 9 ounces and now he’s up to 9lbs 2 ounces as of today! Oh and he’s grown 3 inches since he was born.

Now that Amanda has stopped pumping she’s had a lot more time to find a little bit of sanity and with the feeding stretched out she’s finally able to get some sleep. With me being back at work I’m already getting very little sleep too just because of everything going on, so Amanda has found that it’s best for us both if she sleeps in the living room for now. After all of that time being apart while she stayed at the hospital we end up in the same boat (different boat?) once we’re home, but it’s for the better. I can’t wait for the day when we can just start sleeping in the same bed again.

Watching Talon with his little brother has been so fun! That kid loves Rhett and gets so excited when his eyes are open and he wants EVERYONE to come see. He always wants him to come lay in his bed with him before bed. The first thing he wants to do when he gets home is come see his “baby brudder”. I can’t wait to watch them grow up together. I think with Talon’s super high energy it’ll be a really good thing to help push Rhett along, considering that his heart condition is supposed to make him a little more chill (we’ll see about that). So much fun to come in the future!

This blog has taken me quite a while to write, but there’s just so much going on. We had our first Thanksgiving and it was pretty non-eventful, which was a good thing. We’ve been able to get a decent system in place to feed on the go. Being able to leave the house has been really nice for sure.

This past week has been really hard. Rhett has managed to come down with a cold and it seems to have coincided with a sinus infection for me and I think Talon has a cold too. It’s been a really stressful week with everyone except Amanda being sick. Rhett has been coughing and throwing up a ton, but it’s finally looking like he’s on his way to getting better. He was just starting to smile and all of that good stuff, but now he’s been in a pretty sad mood the last few days.

I think there is probably a whole lot more I could’ve written about on this one, but I really wanted to get a blog done so I can get back on a more normal blog schedule. I’m looking forward to writing about Rhett’s first Christmas.

If my math is correct, today Rhett has been home longer than he was in the hospital and that makes me happy. Glad to have you home, Rhett.

2 Comments

Jordan, I look forward to reading your wonderful blogs! What a great and proud daddy you are! You precious family has the most awesome spirit! Talon and Rhett will most certainly be best friends. I feel that your blogs have been very cathartic for you since the beginning of this journey, and will continue to be so! Take care and have a VERY Merry Christmas!

Thirty eight years ago I gave birth to a beautiful baby girl who decided that she wanted to enter the world 11 weeks early. Her first 6 months were spent in the hospital with a laundry list of complications. She was poked and operated on so many times I lost count. But through it all she was brave and never lost the desire for human touch. If there had been such a thing as blogging, at that time, I’d surely have done it. It is a wonderful way to share your pain, joy, experiences and inspire others walking a similar path, to stay strong. I hope you will continue to blog about your dear sweet Rhett and his amazing parents. It’s a story I don’t want to miss. You all continue to be in my prayers. Hugs and more to you guys.